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Classification of new clinical syndrome will raise awareness and benefit patients suffering from long-term breathlessness

29 August 2017

Professor Miriam Johnson pioneers the classification of new breathlessness syndrome

Miriam Johnson, Professor of Palliative Medicine at Hull York Medical School and Director of the Wolfson Palliative Care Research Centre at the University of Hull has led a group of international experts to agree on a new clinical syndrome to help people living with breathing problems.

Professor Johnson said: 'The agreed name is Chronic Breathlessness Syndrome and describes breathlessness which persists despite treatment for the underlying medical condition and as a result causes disability'.

Chronic breathlessness is a common symptom of end-stage disease including chronic lung disease, heart failure, respiratory and non-respiratory cancers as well as neurological disease such as motor neurone disease. For example, nearly all people with obstructive pulmonary disease (COPD) will experience breathlessness, rising to over 90% in the last weeks of life. It affects their ability to perform normal activities of daily living, reduces confidence and eventually affects every aspect of a patient’s life. Yet the traditional management of patients suffering from these diseases in many cases fails to address this.

Professor Johnson explains that:

Traditionally the management of patients with lung, heart and neuro-muscular diseases has focused only on the underlying disease – for example, the emphysema – without routinely looking at the impact that being out of breath over months and years has on patients’ everyday lives, or how that can be helped.

'By recognising this syndrome, we hope to enable patients to share their concerns about their ongoing breathlessness with doctors and nurses and for clinicians to ask patients routinely.

'Better recognition of the problem will help people access treatments for the breathlessness itself, not just the disease. We hope this will help people regain some control and quality of life.

'For instance, this recognition may help a person suffering with this condition to find ways to play with their grandchildren again without being stopped by being out of breath, another might be able to carry out everyday tasks around the home or pursue interests such as gardening, for example.'

By ensuring all health professionals can diagnose and treat the condition – this will have a direct impact on a patient’s wellbeing.

A basic assessment of patients can result in them managing their breathlessness more effectively and can change the threshold at which breathlessness leads to them giving up the things they enjoy doing.

'Asking patients a simple question: ‘What have you given up to manage your breathlessness?’ can make a difference to understanding the issues they face and how improvements can be made,' said Professor Johnson.

'It is important that, following the classification of Chronic Breathless Syndrome, we make sure that all doctors and nurses caring for these patients, whether in hospital or the GP surgery, are aware of treatments for breathlessness and that those treatments are available across the country.'